“It was then we realised it wasn’t a bone problem or a structural problem, but a problem with my muscles.”
Ms Pennington was diagnosed with spinal muscular atrophy, a disease that affects the motor neurons of the spinal cord, causing muscle weakness and wasting.
Her pain ranges from a “three to five out of 10” each day.
The degenerative nature of her condition also means she is more prone to suffering a back injury while doing everyday tasks.
“When that happens I can’t hold myself up, and yeah, I can get to a 10 pretty easily,” she said.
It is estimated that one in five Australians live with chronic pain and this number soars to one in three when a person is over the age of 65.
A national survey of more than 1200 people who live with chronic pain found about 84 per cent did not find their treatment to be affordable.
The Chronic Pain Australia survey also found 96 per cent felt the federal government should provide a full or partial rebate for accessing allied health professionals to manage their chronic pain.
Jarrod McMaugh, a Melbourne pharmacist and national president of Chronic Pain Australia, said increasing research showed a multi-disciplinary approach to treatment can be effective in managing pain, but these options are often out of reach due to financial or geographical reasons.
“Chronic pain is complex and most people need a spectrum of care so it may involve medication, but it will usually involved allied health professionals as well,” he said.
The survey also found that many people living with chronic pain continued to face high levels of stigma, with more than 70 per cent saying they had felt judged.
Renowned neurosurgeon and spinal surgeon Dr Michael Wong treats patients with severe back problems. He said people with chronic pain continued to face stigma and had higher rates of mental illness.
“Despite back pain being one of the most common problems, there is often a stigma attached to it and people find it really hard to get their pain taken seriously or to be believed, which takes a toll,” Dr Wong said.
When Ms Pennington was first diagnosed with her condition, she did not tell her workplace because she feared she would be treated differently.
“I have the unlucky situation of having an invisible disability so I don’t use a mobility aid or anything, but I also have chronic pain as a byproduct of my disability so again, that’s another invisible thing,” she said.
“I didn’t want to be treated differently. It’s pretty hard for people to get their head around the fact you’re in pain all the time and chronic pain isn’t really associated with young people, it’s more something people think happens to older people.”
The disability support worker and Swinburne University student treats her pain with a mixture of medications which slow down her cognitive response to pain.
She also sees a neurophysiologist at the Rehabilitation Medicine Clinic in Royal Park and regularly sees her GP, who she said had helped her to manage her pain.
More than a third of survey respondents said they had spoken to their GP about accessing medicinal cannabis to manage their pain, but faced hurdles including a complicated approval process.
A major Australian study of 1500 people published in The Lancet Public Health earlier this month revealed no strong findings supporting the use of cannabis in the treatment of chronic non-cancer pain.
But Mr McMaugh said more research was needed into the merits of medical cannabis.
“Medicinal cannabis has got more barriers to access than opiods do,” he said.
“There needs to be a better collection of evidence around medicinal cannabis so that two different things happen. Firstly, medical practitioners who think there is no evidence can start to see what the evidence is and all the people who think it’s the answer to all their concerns are given a more- realistic expectation about what the benefits may be.”
Melissa Cunningham is The Age’s health reporter.